Monday, January 5, 2009

Well after twelve days of "I don't know's", we finally have an answer. They tested Elijah for a virus called cytomegalovirus (AKA, CMV) and this morning it came back positive. This is the virus that they check pregnant women for because if you get it while your pregnant it can be harmful to the fetus. This is what I know from the conversation I had this am with Dr. Al-Zien. 85% of the population will get this virus sometime in their lifetime. To any of us this virus would feel like a common cold. Of course in the immuno-compermised person it presents itself very differently, as we have come to find out. Just to get this out of the way, he is not contagious after the three days of antibiotics that he has had for this. We do get to go home today which is great news!! The bad news is that we have to do 6 weeks of IV antibiotics at home and be in to the doctor frequently for the next few months. When Dr. Al-Zien came in this am, he was actually relieved that this CMV came back positive, because he was starting to become concerned that he was maybe relapsing. As weird as it sounds, I am grateful for 6 weeks of antibiotics. I could write more but I am trying to pack up to go home. I will try an update a bit later. Thanks for all the prayers and support. Love you all!!

It is crazy how different symptoms are for CMV. Beck's have always been GI related (mostly bloody stool, vomiting, diarrhea...you get the picture). The last time he tested positive, I was also relieved. It is nice to have answers. I am jealous that you only have 6 weeks of antibiotics. Beckham has 6 months of antiviral meds. Yuck!

Hi Levi- It's your old friend Carri Wright from way back when, the last name is actually Smith now. I found your blog through blogsearch. Your family is beautiful. Your little Elijah seems like such a fighter. I will keep him in my prayers. What a hard time for your family to go through. Isn't it great to have the gospel to help us understand a little better what our journey is here on earth. I am still in Colorado Springs. I have 5 kids, who I get to stay home with. My husband, Aaron is a chiropractor. We just do our day to day stuff with a house full of kids. If your interested, my blog is thesmithclan95.blogspot.com. Tell Zach hi for me! Take care.

Happy your family is home again! :)I ran into Julie, Blank 4 RN & she said you wanted to tell me hello last time you were here but I was in FL. Thanks for thinking of me & sorry I missed you guys.I got engaged while in FL too on NYE! :)Kami

It was great to see Elijah at the walk...I have video of the ceremony, but have no one smart enough to get it posted to youtube...But, the closing ceremony IS on youtube, it is titled, "CureSearch Des Moines raised how much?"

There are also amazing pix online at Flickr..including an awesome pix of Elijah's name being announced with Emily Price. He looks great.

www.flickr.com/photos/philogyny/sets/72157614618071140/

There will families at St. Baldrick's this coming Tuesday at the Funny Bone at West Glen. Our family is not participating or fundraising, but we will be there to watch. Let me know if you are interested...the families of Club HOPE would like to get to know you all better...but, I do know how busy your household must be these days...so, no pressure intended.

Elijah is truly my hero along with all those kids that received their medals last weekend.

Love reading your blog. Glad to hear Elijah is doing well. I love that you have pictures of your daughter's birth mother (or at least I assume that's who she is). We treasure our pics or Eli and his birth mother, Laura. Congratulations on your new addition, she's adorable.

The HIVES!!!

They started out the same as they always do as small raised areas. They eventually joined together and were HUGE!! He was very itchy and so we got him in the bath, put calamine lotion all over and gave him some benedryl. He took a nice nap after that.

Elijah with his new toy from Dr. Lonzarich

we were done before bed last night...

Here are the Hives!!

Itchy, itchy, itchy.....

Alivia and her new dress-up!!

What a princess...

Michelle was excited about all her new Hannah Montana stuff!!

Levi was NOT!!

Out on pass for christmas with Grandma Arlyce

Dr Al-zein let us take a 3 hour pass on Sunday to have christmas with my mom and Shi. Of corse, Elijah got a fever shortly after we got there and spent most of the time on the couch. It was nice to get out.

Opening lots of presents, she really liked the one that made noise!! Go figure...

Tysa having fun at Christams

A little Christmas at the hospital

We got to do our Christmas at home, but Elijah missed all of the other christmas gatherings with extended family, so he got to open some gifts at the hospital.

Jackson

Or as we like to call him Jack-man

Dominic and Shilo came back for some X-mas fun with their two kidos

Anabelle

Tysa opening presents with Grandpa

Zach and Mere were pretty excited about the car too!!

Tysa and a new toy, she wasn't real excited about the new carset.

Alivia with her new Kitchen

Michelle with her new bike.

Elijah asked Santa for one thing, and that was Hungry, Hungry Hippo's!!!

Elijah first seeing his new car!!!

What Santa left for the kids

Michelle got a bike, Elijah got a power wheels car, Tysa got a new carseat and Alivia got a Kitchen.

Alivia and Tysa in matching Tinkerbell jammies on Christmas Eve

The kids in their Christmas outfits right the Sunday before Christmas.

Did you notice Elijah's hair?? Levi and him did that a couple of weeks ago befor church.

Playing in the pool at the Hotel

We had a free hotel night stay that expired at the end of the year so we decided to go and have a fun night with swimming and staying over. Zach and Meredith came and brought their kids to swim and play.

Alivia and Finley in Alivia's new baby pack-in-play (for her baby dolls)

Tysa in her Santa's helper onsie.

This was sooooo Funny

I was doing laundy and Elijah decided he wanted to help me spray stain remover. Well he payed no attention to Tysa sittin on the floor and bent over right in front of her. Well, what would you do if you were a baby???

Family picture

Cute, Cute!!!

All the kids together

Tysa

Michelle

Elijah

Alivia

Tysa 3 months

Michelle 10 years

Alivia 20 months

Elijah 3 1/2 years

Tysa at 2 1/2 months

How cute is she!! Holly's mom got these sunglasses for Tysa when we were in Utah. Thanks Jana, they are perfect!

Grandma Doris with Tysa

Fun with Grandma Doris

Tysa

She always wakes up right after I take the picture.

I couldn't resist the two cuties in their bikinis, yes matching!!

Are they cute or what!

Fun at the Pool

It took awhile for Elijah to enjoy swimming more than five minutes. He LOVES it now!!

Cover that beautiful bald head!!!!

Bridgette and Alivia at the zoo

Bridgette and her family were back for a short time and we played and had lots of fun, oh yea and I had lots of help!! Thanks guys.

Elijah and Tysa

Soooo, cute!

From left to right : Abby, Ashely, Isabelle, Michelle, and Tia.

Michelle turns 10

We took Michelle to Libby Lu for her birthday with some friends and they had a blast!

Michelle (our new addition) and Alivia

This is at Grandma Doris' house on the "tank" that I always use to play on when I was little. It was fun to go out and see grandma and watch my little ones play like I use to!!!

Tysa

Little bit of humidity = little bit of curl

Elijah and Tysa riding in the stroller

This was at the clinic today and as we were leaving one of the nurses said that this would be a great picture. So what did I do, I stopped, put everything down and captured the moment.

"Alivia, don't sit on the baby"

Cutie Pie

This picture was a bit blurry, but so darn cute I couldn't resist.

Elijah and Alivia at the Zoo

Elijah had fun too, but was a little more skittish.

Fun at the ZOO

Alivia thought it was great to feed the goats. I wish I would have been able to capture a picture of her right after she gave the food because she had the cutest giggle!!

Elijah and Tysa

I knew Elijah and Alivia had fair skin, but next to Tysa they look like ghosts!!

"KISSES"

Cute Sisters!

Can you tell that Tysa has about had it with the squeeze??

I'm 1 month old!!!

At the hospital

Elijah never forgets the wagons at the hospital, and now he has someone to share it with.

I like my milk

She wasn't ready to give it up.

I'm 3 weeks old

At the Clinic with baby Tysa

Dr. Mitchell walked by our room and thought Elijah was holding a doll!!

Fun at the Zoo

This was my real first outing with all three kids. We went with Shilo (my sis) and her two kiddos. It was a little crazy, but we made the most of it. Elijah fell at one point and skinned his knees and I was holding Tysa. It was probably pretty funny to watch me juggle both of them!!

My two girls

Alivia with her new sunglasses!

Jennie bought them for her and Elijah and she thought she was hot stuff. Well, she is!!

I wanna hold her!!

Elijah takes every opportunity to hold "baby Tysa". He even sat and fed her a bottle!!

Elijah meeting Tysa for the first time.

He looked at her and said, "she's pretty cute!" How sweet is he.

Home at last!!

This was at the airport when I arrived with Tysa. Tysa got an alligator toy for Elijah and it was hard for him to take pictures and play at the same time. It was so great to be home and back with my family. I missed Elijah and Alivia like CRAZY!!

Bath Time!!

First bath after leaving the hospital. She seems to really like them and is wide awake after!

This is for you Shilo!! After all you did buy it for her!!

Snuggle Bug

We bought her a premie outfit and it almost fits!!

Ahhh, Tender!!

Daddy and Tysa about to fall asleep.

Leaving the Hospital

This was Alivia's go home outfit and we were so happy to leave the hospital.

Placement

This is us at placement, such an awesome day with many different emotions.

Bridgette and Sandy

This is Bridgette's caseworker Sandy. She has been so awesome!! She deserves a much bigger thanks than we will ever be able to give her. THANKS Sandy!!

Swimming in newborn clothes

Pretty in Pink

Awake and Alert

She has been the most content baby (knock on wood). Hope she stays that way. I can't even really tell you what her cry sounds like??? Awesome!!!

Proud Parents

She is sooooo cute, and sooooo little!!!

Tysa Marie

How cute is she!!!

At the Zoo

Elijah wanted to make sure I got the giraffe in the picture.

Elijah and Anabelle

They had candy and wanted to show me what color it made their tongues. Silly kids.

What a cutie!!!

Alivia at the Zoo

Still HATE medicine!!!

Are you sure I have to take this dad?

Elijah in the Hospital this last weekend

He was way too happy to be in the hospital.

Alivia in her blessing dress

Elijah is allergic

This is when Elijah had an allergic reaction to one of the chemo meds. Wow, this was scary!! Then came the hives....

Can you say HIVES! Yikes!!

He was so miserable. Poor littke guy just can't catch a break.

Radiation Treatments

This is the machine that they use for Elijah's radiation treatments. Can you say $$$!!

The "MASK"

This is a little disturbing, but this ensures that Elijah is in the exact same position every time they do the radiation treatment. It is very important that he is in the exact same position every time.

Isabelle and Elijah

Isabelle came to play too. They had some fun!!

Friends to Visit

This is Tony and Tammy (Dominic's cousin) that came to visit and brought Elijah and Alivia some great stuff!! They also brought mom and dad some generous gift certificates. Thanks so much for EVERYTHING!!!

Fun in the hospital

Dand and Elijah making play-doh hats!!

A strange rash

This picture doesn't really do it justice, but it was like nothing I've ever seen before. It was itchy at first but hasn't been bothering him much anymore.

Bath time fun

Elijah got to pour water on Alivia's head (only because she thought it was funny and allowed him to do it).

Elijah at the Outpatient Clinic

This is the famous Hippo bed that Elijah loves to see when we go to the clinic for chemo.

Our two Squirts

This is Elijah and Alivia playing at home. Now that Elijah has lost weight, Alivia is starting to catch up with him!

Happy Day at Home

Elijah had a blue sucker this afternoon, yum yum!! He has been pretty happy for most of the day.

Merry Christmas

Alivia was excited about her new toys!!!

Our (late) Christmas

This was one of the few smiles we got from him.

In the car to LEAVE!!

I think he just didn't believe us at first that we were actually leaving. He was happy to know that we were really going.

Happy Girl

She was so happy to hear we were going to be home soon!!!

Another Pet Therapy Puppy

This puppy was 12 weeks old and she was so cute. It was nice to finally see Elijah be excited to see and pet these puppies because the last two times they have been up he didn't want anything to do with them. I'm hopeful that this means he is maybe starting to feel better.

Pet Therapy

This is the grown dog. She is twelve years old and has been doing pet therapy snce she was a puppy.

Happy Drugs!!

Does this look like nomal Elijah or What??? This was the highlight of my day. Love you Squirt!! Oh yea and the food all over his face. He ate two bowls of spegetti and even some french fries this afternoon. Yum Yum.

Elijah with his poster shark

This is Elijah putting some stickers on his shark poster that one of the child life specialists made for him. You can really see his cheeks in this picture. One of the side effects of the prednisone is a "moon face", and he has one!! Still cute as can be.

Grandpa Hancock giving platelets

This is Grandpa Hancock donating his platelets to support Elijah. Thanks so much Grandpa!! We love you!!

A small smile

It was hard to get a smile after cutting his hair, but we managed to get a small one.

A visit from the Wilson's

Paul, Debbie, Melissa and Sydney came to visit us and brought Elijah some pretty cool stuff. A fishing game and a "Cars" coloring book. Thanks Guys for everything.

Elijah and Dad after the CUT!!

He started to cheer up shortly after we cut his hair. Levi and I left that evening for a couple of hours and my Mom came to sit with him. While we were out Elijah said to my Mom "I have cool hair like Dad". Maybe it's not so bad after all.

Thank You to All

We all want to say thank-you to everyone for everything!! We Love You All!!

Elijah with Mommy

Elijah wanted to sit with me in the chair for a little bit, however he wasn't crazy about having a picture together.

Alivia and Daddy

Where's your hair Daddy??

Yesterday Alivia wouldn't touch Levi's head and didn't know what to think. Today she was slapping it and having some fun.

Elijah is finally losing his hair

This isn't a very flattering picture, but just an idea of what I'm talking about with his hair. Also, this is him sleeping on his tummy.

And Jordan, too!

Jordan also joined in his show of support.

New Ocean Animals

These are Elijah's new ocean animals that he was really happy about, not judging by his expression.

A visit from Isabelle and Ava

This was yesterday when they came to visit and they were brave enough to wear masks too so that Elijah didn't feel so bad about having to wear one.

Isaac is BALD

This is the after. Thanks Isaac for suporting Elijah, you better keep it up.

Isaac joins in

This is the before.....

Saving the best for last

A sweet smile from a sweet boy today

The "Gang" all done

Thanks for everything, you guys ROCK!!!

Sleepy Boy

This is Elijah sleeping through it all

The Brothers All Done

This is Zach, Woody and Levi. Jordan also shaved his head in Las Vegas and sent us the video so he could be apart. Isaac, your next!!

What a Stud

This is all done, and like I said I was surprised he looked so handsome!!

Half done

The idea was to look like an old man, I think this works!!

Levi's First

Levi was the first to go!! Jarod is the barber.

The "Before"

From left to right: Woody, Levi, Jarod, Zach, Jason, Nate

Tub Time

Elijah was having fun making his sharks and whales jump in the water.

The dreaded mask

Walking back from the play room with an armful of animals.

Play Room Fun

Of course we are playing with all kinds of animals, that's always Elijah's first choice.

Falling asleep on the potty

This is one of the many times Elijah was up to the bathroom and fell asleep leaning on mom.

Thanks for all of the fun stuff

Thanks to Rick, Shani, Becky and Larry for all of the fun stuff to play with. Elijah especially loves the Nemo stickers and the Diego ball game.

I get to have food again!!

Elijah really is happy to have food agian, even though it doesn't appear that way.

The "Look"

This is the look we get about 23 out of the 24 hours of the day. Isn't he sweet!!

MEDS

This is what we have to force Elijah to take every morning and evening.

Last spikes

I took a picture of him sleeping with a straight face as opposed to awake and frowning. Hope that he doesn't lose his long pretty eyelashes.

Fun with Alivia

We had fun playing and I'm so glad that we are back in Des Moines so we can see her more. Cute little girl!!

Sweet Boy

He was exhaused from being so mad.

So Sad!!

This is when Elijah was so sad to see that we were back at another hospital and not at home.

Nap Time

Elijah slept the entire way from Iowa City to Des Moines. And yes, we had the car completly packed full!!

Music Time

We were able to get Elijah to the play room while still in Iowa City to do music time. He was sceptical at first, but it didn't take him long to start enjoying it. He peed through his clothes while sitting on that chair.

Elijah in the play room

It was hard to get him there, but he was better when he saw all of the dinosaur stickers and glitter pens to play with

A friend in the play room

This is Mya. She will be two in March. She has a brain tumor, and has had a couple of surgeries. She has also had chemo and lost all of her blonde curls according to her mom. What a cutie!!

Paly Room Fun

This is Elijah, Addy, Jenni and Levi in the play room

First Steps

This is Elijah taking his first steps after being in bed for nearly two weeks. He is still very unsteady, but we are going to work on building those muscles back up.

Elijah with Grandma Arlyce

This is the HUGE dinosaur coloring/sticker book

Wagon ride

Get me out of this room!!!!!

Yea Food

First food in almost two weeks. Good choice Elijah!!

Elijah snuggles with Dad

We are in our new room and Elijah wanted dad to "lay with you". They are snuggled in bed together watching a movie.

Smiles

This is Elijah's first smile in over a week. We love to see you smile squirt.

Elijah with Isabelle

Isabelle was able to get him to smile a little with the breadstick in her mouth.

Elijah with Dad

We were able to get Elijah out of bed for awhile and Levi got to hold him. He was in Heaven!

Families are Forever

Sleepy

Elijah was talking to us a little, but it was hard to keep his eyes open.

Yumm

For some reason, Elijah decided that he needed to lick his IV tubing and hiss at it because it was a snake.

Elijah and Bruce

This is Elijah with his favorite shark. He loves to sleep with it at home.

Elijah with Mommy

I was telling him about all the fun stuff he has to play with when he wakes up. I told him about all the things people have brought for him.

My two Boys

daddy's healing kisses after extubation

Thanks for visiting

From left to right, Levi, Jason, Teresa, Melanie, Amanda, Zach, Meredith. Thanks for the laughs!! When you guys left the nurses were disappoined that the "comedy crew" had left!!

About Me

Our Nurse Kami

Kami has been so great to Elijah and all of us!! We look forward to seeing Kami back in Des Moines as she will be moving this week and starting a new job at Blank NICU. Our first and fondest memory of Kami so far is when we were first admitted, she was our nurse. This was before Elijah was asleep and I was trying to tell him that her name was Kami, and Elijah looked at me and said, "I want some candy". If any of you know how Elijah says candy, it sounds a lot like Kami. Thanks Kami for being so sweet and taking such good care of our little squirt!!!

Our nurse Josh

We had some good laughs with Josh. When he first came on shift I had asked him how long he had worked here. He told us 4 years and I said "Well, we've had great care so far". I'm still being mocked for insulting Josh even though I said it as a compliment. Thanks Josh for watching out for my little boy. Elijah also had his first bed bath from Josh.

Our nurse Jen

Thanks for your great care

Elijah and Santa

Elijah loved Santa this year and after he was done, he kept trying to go back for more

Elijah and Ava

you're so funny

Happy Sister

This is right after she found out about our latest results on the spinal fluid

My to boys sleeping

This is when Elijah was really struggling to breath, but also trying to sleep